A Milwaukee brewery owner is looking for more breweries to help him raise awareness and funds for rare diseases.
Jonathan Kowalske, founder and owner of Component Brewing, is a big supporter for rare diseases, as his 6-year-old son Mac was born with Malon syndrome. For the past few years, Component Brewing has been releasing a double IPA to help those born or suffering from a rare disease.
“In the past, we called this beer Fancy Genes, and it was crafted to benefit just my son’s specific disease, but we kind of quickly found out if you’re doing something that only affects 200 people world-wide, a lot of people aren’t as interested, as sad as that sounds,” Kowalske says.
“But there are so many people suffering from rare diseases, and one in ten people are affected so we think a beer for rare disease awareness will have a better, overall impact,” he adds.
So, the beer has been renamed Zebra Hop, and it will be released on Feb. 29. “The 29th of February is the rarest of days, and 2024 is a leap year,” Kowalski says.
The majority of profits for this beer, which will sell for about $15 to $20 for a four-pack, will benefit National Organization for Rare Disorders or NORD. “Outside of labor and the cost of ingredients, all the profits will benefit NORD,” he says.
Though Kowalski is encouraging fans of his Milwaukee brewery to come out and purchase the beer on Feb. 29, he hopes other breweries will join the cause. Kowalski is seeking other breweries and brewing companies to brew their own version of Zebra Hop to benefit NORD.
“I am reaching out to breweries across the country to join me and come together and create a unique and delicious beer to raise funds to find a cure,” Kowalski says. “If your brewery’s schedule doesn’t allow you to create a new beer in time for this collaboration, you could re-create an existing beer and re-label it.”
Omega Yeast, Malteurop, and Blue Label Packaging are graciously offering discounts to any breweries which participate in this collaboration. “I would be ecstatic if we had 30 to 40 breweries join me in brewing for this cause,” he says.
Interested breweries and brewing partners can find more information and join the collaboration at www.zebrahop.com. “The more breweries that join, the more awareness we can raise,” Kowalske says.
Kowalske says he and his wife Julie’s journey with rare diseases began when Mac was born. His head was a little larger than normal, but his first doctors dismissed their concerns. “He was a very colicky baby, throwing up all the time,” Kowalske says. “My wife had good mom intuition, and she pushed for testing and imaging.”
That’s how they discovered Mac has Malan syndrome. “He had three brain surgeries before he was a year old,” Kowalske says. “Then, with genetic testing, he was diagnosed with this rare disease.”
Today, Mac is a happy, 6-year-old boy who plays on a special needs hockey team. He also is on a rigorous therapy regime, and he sees neurosurgery, neurology, spine, gastrointestinal, genetics, vision, behavioral health, and other specialists on a regular basis. He also receives a daily regimen of multiple medications help with some of the symptoms of his disease. “We call him the mayor because everywhere we go, everyone knows him,” Kowalske says. “He’s a popular guy. He likes to hang out in our taproom and toast people with his Coke.”